My Life

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Kati in 2006, continuing with dialysis

The summer between my Junior and Senior year, I lost my kidney. I was put on dialysis. I had to do dialysis every night at my house for 12 hours. Quick math: if I got up at 6:30 to get ready for school, that meant I had to be home by 6:00 the night before so that I could get the machine set up. Oh boy! A six o’clock curfew my senior year? As if I weren’t already having a rough time. I spent a lot of time in the hospital and with Nick in college, I had no one to compete with. My obsessive nature turned to the nursing students at the hospital studying for the NCLEX. I started studying with them. The great thing about children’s hospitals is they don’t expect you to stay in your room. I would sit at the nurses’ station and we studied together. Shortly before the exam, we all took a practice test and I scored higher than the nursing students. But even that didn’t stop the depression. I got really sick. I stopped eating and when I did eat, it never stayed down. To add insult to injury, the doctor decided a feeding tube was a good idea. While force feeding is a very effective means to help gain weight, it does nothing for one’s self esteem. I had the feeding tube for all of my “big senior moments.” Our senior class went to a local park to get group senior pictures. The yearbook staff decided to go ahead and get individual shots of our top ten. They didn’t know who the top ten were, but based on who they thought was smartest, they began taking pictures. I asked why they wouldn’t take mine and one of my “friends” replied, “it’s not that we don’t think you’re smart, but you know there is no way you’re in the top ten.” I had gone out of my way to take the hard classes. I was dual enrolled my senior year. I was taking college classes. Our valedictorian wasn’t doing that. But maybe challenging myself was a bad idea. Maybe I should have taken the easy classes. I wasn’t in school half the time anyway. She was right. There was no way I was in the top of our class. One of the highlights of my senior year was the day they announced the top ten and our valedictorian, also yearbook editor, had to come apologize for overlooking me and take my picture to be put in with the top ten.

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Kati on prom night, 2007. To attend she had to take painkillers and temporarily remove her feeding tube.

On April 20, 2007, a friend and I went down to Panama City Beach, Florida. Yes, our parents let two young, not so bad looking, 17 year olds go to one of the most notorious spring break party spots on 4/20…alone. For some reason that I still don’t understand my parents trusted me to go. We didn’t do anything bad, though. We stayed on the beach and just hung out. We drove back home the same night. Dialysis, remember? The next day, Saturday, I couldn’t get out of bed. My hip hurt very badly. Sunday I wasn’t much better and Monday school started back. I had to go to school! What is a good spring break trip if you don’t go back to school and over exaggerate it? During my first class I was in pain. By my second class I couldn’t make it to my desk and so the teacher gave me a stool to sit on. I couldn’t get on the stool and the teacher recommended I go home. Someone had to bring my car over to the class room. I couldn’t get in the car. At this point my mom had been called. A faculty member decided her SUV would be the best mode of transportation, which also failed. By the time my mom arrived, I was screaming in pain and an ambulance had arrived. I remember my mom telling me to stop being a drama queen and me begging her to understand that I was not being over dramatic when I said I felt like I was dying from pain.

A family friend told me once that the reason I was going through everything I had been through was God trying to get my attention. I remember the day the ambulance came to school very well, I had never experienced something so painful. I remember begging God to just tell me what in the world I had done so terrible in my life that merited that much pain. I had a few drinks with a friend a couple of times. I had gone to a co-ed sleep over once that got a little out of hand. Then, of course there was that one guy, and the cutting. Did any of that cause my current pain? All of that stuff came flooding in my mind and overwhelmed me, but still, were they bad enough to cause that amount of pain? Was I bad enough to be punished that severely? I’d never stolen anything or killed anyone. Three shots of morphine and two shots of ativan later, I was effectively knocked out and transported to Birmingham’s Children’s Hospital. The doctor said if they had waited another day I would have died from the infection if the pain didn’t kill me first. Somehow my hip had gotten septic. They cleaned it up and in a couple of weeks I was back at school.

The week before my high school graduation I had blood work done that showed I was really sick. My doctor called two days before graduation and said “you have to come up here. I’m putting you in the hospital for tests,” That was a pretty common thing that I was used to, but this time I wasn’t going. I had worked too hard to get through school to miss my graduation. The doctor said that was fine, but as soon as graduation was over I had to go straight to Birmingham. So, on June 2, 2007 I graduated from Houston County High School with honors and in the top 10 of my class. I didn’t get to go to any graduation parties or anything like all of my classmates, but it wasn’t so bad because all of my true friends were the people who worked at the hospital in Birmingham.

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I got accepted into the UAB School of Medicine. I got a scholarship to attend provided I play the tuba in their band. In high school my instrument of choice was trumpet, but my profile does not exaggerate my musical ability. I do play well over 20 instruments so I had no problem playing tuba. My parents, however, had a problem with me being three hours away. I was still doing dialysis every night and it was more than my parents thought I could handle. So, I enrolled in our local community college where I met this super nerdy trombone player. For the life of me I couldn’t remember his name. So I took to MySpace. I started looking through all of the guys enrolled at the college. I never found the trombone player, and to this day have no idea who he is. I did find someone else though. A 24 year old Florida Gator fan with a red convertible. He was so cute and I was a sucker for nice cars so I messaged him. We talked for a week or so and decided to meet up. I don’t believe in love at first sight. I think you can be attracted to someone instantly but not fall in love. After our first date, I won’t say I loved him, but I knew I would and I knew that he was the guy I would marry. *Spoiler Alert* I was right.

August 17, 2007 we made it official and exclusive that we were a couple. In December, I scored some tickets with awesome seating to a concert in Birmingham and I took him to what would become a yearly tradition. This tradition ended up playing a HUGE role in where I am today. You’ll see. In June of 2008 I had my first hip replacement. I was scheduled to have my second in December of the same year, but I got an infection called peritonitis that resulted in the loss of my dialysis tube. I was put on hemodialysis which meant I was going to a clinic three days a week for 4+ hours a day. Think about cleaning your house: it will be much cleaner if you clean it every day than it would if you did it every other day and took the weekends off. That’s what happened to me. I started having seizures because of the toxin build up. These seizures mixed with our yearly Christmas concert seem so insignificant in the grand scheme of my life.

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Kati’s wedding, 2009

The following June I had my second hip replaced and on June 17, 2009 my MySpace guy proposed. I was back on peritoneal dialysis at home and in August, I got my first real job and we bought a house. We moved into our new house on October 17, the day we got married. Things were good and I have a hard time recalling how things started getting so out of control. I remember I was able to walk down the aisle, I remember I was able to stand through the entire ceremony. I danced at my reception. Yet somehow, by May 2010, I had to sell my car and buy an automatic SUV because the pain was so bad I could no longer drive my car. I was also using a walker to get around, by August I had started having trouble with my dialysis. By October I was back on Hemo, which resulted in me losing my job. By November I was learning to read Braille because I had lost my vision. I was back on peritoneal dialysis, but it was not working well, but it was time for our annual concert tradition in Birmingham. A doctor had discovered that by taking my old enemy, steroids, I was in less pain, and thus able to walk short distances unassisted. This concert has one of the most amazing light shows you will ever see. I remember thinking that night “good thing I don’t have seizures anymore.”

The seizures I had are called focal seizures and the best way I can describe them is by comparing my brain and body to a computer. It was like someone had unplugged me and plugged me back up really quickly. When I was “plugged back up” I was a little disoriented but quickly went back to normal. When I woke up the morning after the Trans-Siberian Orchestra concert, I knew something was seriously wrong. Every piece of my body screamed “DON’T GET OUT OF BED!” But we had to drive back home and my cousin, who we were staying with, was excitedly telling us it was snowing. My family has told me they can tell when I have those seizures because I will just stop mid-sentence, get a strange look on my face and then continue as if nothing happened. The whole thing happens in a matter of seconds. That morning I’d had several and my husband knew it. My husband assured me that no one would care if I didn’t get up, but the southern belle in me knew that just wouldn’t be proper. So, I got up. I walked into their living room and my cousin wanted me to go look out the window. As I watched the flakes fall, I had a seizure. I blacked out for a split second. I came to just in time to hear my leg snap as I fell to the ground landing on it. I was rushed to the ER where I was told I’d broken my tibia and fibula, the two bones below your knee. Joe Theisman anyone? They said the only way my leg would heal correctly and in a timely fashion was with surgery. One of the things that happens when you have no kidneys is your body stops making new blood. Your kidneys produce the hormone that tells your body to make blood. When your body doesn’t make blood, you aren’t a particularly good candidate for surgery. The solution was a blood transfusion. I was on a lot of pain meds (seriously go watch the Theisman clip) so the decision was left up to my mom and my husband. Here’s the dilemma: without the transfusion, no surgery and prolonged pain for me. As a person on the waiting list for an organ, every blood transfusion lowered my chance of getting a matched donor. I already had a PRA number of about 95. That basically meant that about 5% of the world’s population might be a match, but not all of those people were dying to give me a kidney, so it was less and less likely I’d get one. They opted to go ahead with the transfusion and the surgery.

My in-laws own a cabin in Tennessee. It’s where my husband and I had our honeymoon and several other vacations. By January my dialysis had stopped working. My body was retaining a lot of fluid and was overran with toxins. I’d been waiting five years for a kidney and the odds were not in my favor to get one anytime soon. My husband tells me he would stay up at night and listen to me breathe, terrified that I wouldn’t wake up the next day. We both silently recognized that every day was a gift and the number I had left was very limited. We decided to just go enjoy each other and the mountains and try to make the most of our short time left together. It was the last night of our vacation. It was a Monday. The 17th. We talked about the fact that we would most likely never have kids, but that we could live with that. It was a silly conversation that implied I would be alive long enough for it to matter. We were watching Monday Night RAW and Randy Orton was wrestling Dolph Ziggler when we woke up and realized we were missing the show. We turned the TV off and went back to sleep. A couple of hours later my phone rang. By the time I got to it, it’d stopped ringing. It was my mom though, which worried me. My dad worked night shifts at a warehouse, my grandmother had been sick, my uncle was a state trooper. Any number of things could have happened and I knew something was wrong. My fears were confirmed when my husband’s phone began to ring. By the time he found his, it’d also stopped ringing. Mine rang again and since I had it in my hand, I answered it immediately. My heart sank when mom said Birmingham had called. I had recently had blood work done and I just knew it was bad news. But wait. Why were they calling so late? Mom gave me a number to call and I spoke with Tim, who informed me that there was a kidney. I needed to get to Birmingham ASAP. I learned two things that night 1) my husband can talk very fast when a police officer pulls him over and 2) my car shuts off at 100 MPH. I got my kidney on August 18, 2011 and, in spite of my blood transfusion the month before, it was a PERFECT match.

My eyesight improved slightly after my transplant. The seizures stopped. My leg healed. Unfortunately, after it healed, I was back to using a walker. I have had my kidney for 2 1/2 years now with no problems. I’m still considered legally blind and I live with debilitating pain on a daily basis that prevents me from walking on my own. After the leg break and the transplant, I got severely dependent on painkillers. I was having problems coping and adjusting to my vision loss. Things seemed hopeless with my leg pain. Insecurities crept in and I began to worry about my marriage. Why would anyone want to be married to an overweight woman who couldn’t work and had to depend on other people for everything. I felt like I was a burden on everyone who knew me. Everything seemed so incredibly hopeless and for the first time in my life I considered the possibility that I actually did want to die. I wrote letters to my husband and my parents and took an entire bottle of the medicine I was on. I instantly regretted it and was scared and wanted to take it all back. We live about two minutes from a hospital and my husband got me there very quickly. The next day I came home and it’s rarely been talked about since. It was really hard writing about just then, and I considered not including it. It’s something I’m ashamed of and still very painful for my family. But, it’s still part of my story and who I am, and if I can help even one person with my story, then it was worth telling. For that reason, though, even though prescription painkillers help my pain immensely, I won’t ask a doctor for them or have them around. A therapist later told me that steroids can have a huge impact on your emotional state and that they played a huge role in my actions that day.

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Kati today, about to start school in the fall of 2013

So, here I am. 24 years old. This fall, I start back going to college. I stopped attending after I got peritonitis in 2008. I’m as determined as ever to become a pediatric nephrologist. I also intend to do extensive research and use my chemistry major to find an alternative to steroids in post transplant patients. As my profile states, I currently own my own cake company. But who wants to buy stuff from a blind cake decorator? I actually make really good cakes and I enjoy it a lot, but I couldn’t live with myself if I just “settled” and gave up on the dream I’ve had since age 12 to be a doctor for kids like me. So, I have a few things I really want people to get from this crazy long story.

1) No matter what you are going through, your feelings are valid and they DO matter. Your feelings do NOT make you weak or a coward unless you let them cripple you by internalizing them and not getting help.

2) If you are having extreme feelings of depression, anxiety, and/or hopelessness PLEASE PLEASE PLEASE talk to someone! Whether it’s a professional or a local support group, find someone to talk to. You are not alone. You can even email me if you’d like, but please just tell someone.

3) Life sucks and it isn’t fair. This is one of my favorite sayings. So pessimistic of me, but when you’re going through crap, let’s be honest. “It is what it is” and “This too shall pass.” Aren’t incredibly helpful, I’ve been dealing with my crap for 12 years. Still waiting for it to pass. It’s easy for people who don’t personally know what you’re going through to give you platitudes. So I won’t be one of them. Life sucks and it isn’t fair. God is not punishing you. Life just sucks, and it isn’t fair.

As a Christian, I do attribute my life events to him. I know that it’s only by the grace of God that I’m here to tell my story. All the little things that have worked out and fallen into place are things I can see his hand in. And the pieces that don’t seem to have a place in my big picture, maybe they will one day. Or perhaps, they are pieces that are meant to help someone else’s big picture. Who knows?

When Justin said to me “I think you have a really interesting story”, I don’t imagine this is what he had in mind at all. I don’t actually know how much he knew about me until now. I don’t even know if anyone will even read this. I probably wouldn’t, but he asked me to write what I feel. So, I did. Be careful what you ask for! This was a lot harder to write than I thought. This is the first time I’ve ever sat down and written out a lot of this stuff. I’ve written papers for school and been a guest speaker at churches, but left out the really dark stuff and the deep feelings that came with it all. I think it was just as much helpful for me as I hope it’s helpful to others. If anyone who does make it this far needs someone to talk to, or if you just have questions, please don’t hesitate to contact me! Thank you so much for reading this.